In an earlier article, I've spoken about the power of Google and how it can benefit both patients and medical providers. Through the power of the internet, advocates can help…
As reported in News Wise, in Hackensack Meridian Jersey Shore University Medical Center and the Cleveland Clinic, one patient’s unlikely success story led researchers to conclude that a balance of…
The Rare Disease Legislative Advocates (RDLA) held its monthly webinar on May 20, 2021. The primary focus of the webinar was a discussion and overview of drug pricing proposals that…
India has been dealing with a harsh second wave of COVID-19, resulting in 300,000 deaths as of Monday, May 24th. Now, there is a new fear for those who have…
According to an article in Healio, Dr. Anisha Dua recently addressed attendees at the ACR Clinical Symposium on the subject of antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis. Dr. Dua is the…
There are multiple gene mutations associated with severe combined immunodeficiency (SCID), a rare genetic disorder which severely inhibits - or stops - immune function. But according to New Atlas, an…
Now that there are FDA-approved vaccines for COVID-19, millions are flocking to get their doses. A very small portion of these people are now experiencing myocarditis, and 18-year-old Evan Morud…
While some therapies offer potential benefits to patients, not all therapies show efficacy within the clinical trial environment. Recently, shares MedCityNews, this occurred with biotechnology company Biogen Inc.'s ("Biogen") gene…
In an article published in The American Journal of Managed Care (AJMC), researchers provided an overview of the current treatment and management paradigm for systemic-sclerosis (also called scleroderma) with interstitial lung…
Molly Ringwald, the star of a number of classics from the 80's, is the spokesperson for the National Meningitis Foundation's new 16 Vaccines campaign. The campaign focuses on the second…
From April 23-25, 2021, the American Academy of Dermatology (AAD) held its Virtual Meeting Experience (AAD VMX 2021). During the event, over 75 meetings discussed various research and other insights…
The U.S. Food and Drug Administration (FDA) runs a number of programs designed to facilitate research and drug development for serious conditions. One such program is the Fast Track program;…
Feeling sore after an intense workout isn't out of the ordinary. It's normal for one's legs to feel a little wobbly or to hurt a bit while walking around. That's…
According to Multiple Sclerosis News Today, the European Commission (EC) recently approved PONVORY (ponesimod) for the treatment of adult patients with relapsing and remitting (R/R) or active secondary progressive (SP)…
A recent case study published in The Journal of Cancer Research and Oncobiology is believed to have recorded the first case of lactic acidosis in a patient with small lymphocytic…
In 2020, Dr. Paul Orchard, a pediatric blood and bone marrow transplant physician at M Health Fairview University of Minnesota Masonic Children’s Hospital, attended a medical conference that would change…
Lindy Thrackston, a FOX59 news anchor in Indianapolis and emcee for the Indiana Pacers, interviewed recently with ON TODAY. She says that her cancer was caught in time but…
Cystic fibrosis patients around the world are fighting to gain access to a range of drugs known as CFTR modulator therapies that could have a hugely beneficial impact on their…
Click here for part 1! At this point my joint pain was severely impacting my quality of life, so I looked for other sources of help. I joined a…
As reported in the Northhampton Chronicle;, sometimes it's our toughest challenges that inspire us to grow taller than we thought possible and to push past our notions of our limits.…
Currently, there are a number of potential treatment options for patients with multiple myeloma: immunomodulators, chemotherapy, HDAC inhibitors, steroids, and proteasome inhibitors. But according to Medical XPress, Peter Mac scientists…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
According to Medical XPress, researchers from the Cerebrovascular Surgery and Interventions Center at Boston Children's Hospital recently developed a new test that can benefit patients with Moyamoya disease. This rare…
In many cases, therapies for patients with rare disease are first tested or developed in either 2D cell cultures or in animal models, such as fruit flies, mice, or zebrafish.…
There are plenty of sounds that are annoying or harsh on the ears: nails on a chalkboard, screaming babies, and loud construction are a few. But for some, there are…
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